Susan’s Story

I began having a burning pain from the lower abdomen to the clitoris with a feeling of pressure on the bladder in 1985, when I was 33. Although continuously tested, no urine infection was ever found. When episodes of discomfort were too long, and because of a history of kidney stones, cystoscopies & ultra sounds of pelvis and kidneys were done to no avail, In between tests the pain would flare up on a regular basis, for a couple of days or half a day. It appeared after intercourse, sometimes when under stress or for no reason at all. Late 2001 I had a swollen right Bartholin gland as big as a golf ball (blocked duct it seems, which didn’t show any infection). The gland went down after a few more flare up (which coincided with intercourse). The discomfort increased with a vengeance and became intolerable, I couldn’t stand any piece of clothing touching the area. The pain was quite strong at the tip of the clitoris and my skin around the vagina was ultra sensitive, which made me think that it was nerve damage and not a urinary infection following another negative urine test. I visited the doctor four times in a row, was given two lots of antibiotics for more suspected urine infections. I was perimenopausal at the time. After a very long cycle and very painful period pain I had to visit the surgery once more with thrush and that clitoris pain that wouldn’t go away. The doctor took a swap to eliminated infection of the urethra. I mentioned to her that I felt I had problem with a nerve and not my urinary track. The pain was reacting right through my body; I could feel sensations on my extremities when it was at its worst. I was so desperate I searched on the Internet to find answers. My doctor agreed with me and said there wasn’t any real cure for what seem to be vulvodynia, and I asked her to give me a referral to see a specialist to get further advice. By that stage the pain wasn’t giving me much break. The pain around my pelvic flour increased. I felt a extremely burning pain in the vulva area and also painful tightness of the vulva and strong contractions of my vagina & buttock, especially when sitting. it affected also my thighs, my hips and my back. I felt the sensation going through my body even down my legs. Anything touching my clitoris would exacerbate the problem. but no sign of any skin problem or rash. I found it hard to go to sleep most night. I took the occasional sleeping tablet but when I woke up, it flared up again or It actually woke me up. I would have breaks, short one usually. The pain was not always at its peak. Sometimes if my mind was extremely busy (eg. talking to a friend for a long period of time) the pain would subdue a little. I was handling it but some days when it was too painful for too long I would despair especially at night. After more than three months of intense pain I saw a dermatologist. She examined me and could not find any visual problems and told me that I had a neuropathic pain with no other explanation. She gave me a prescription for Endep (Amitriptyline) to increase slowly as necessary. I was reluctant to take antidepressants but didn’t have much choice. I was very fortunate that it helped reduce some of the pain and I could have better life. 15 years later at 65 years of age, I still take Endep. I still feel pain some days more than others but I manage it not wanting to increase my medication higher than 25mg unless I can’t cope anymore, I then increase the dose to 50mg. I’ve tried to stop taking Endep a few times but within a couple of day the pain becomes so bad i have to get back on medication. Since menopause I have experienced tingling in my legs regularly and have a lower back problem. It helps if I sit straight on a firm chair without pressure on my lower back which triggers my nerve. Anything too tight around the pelvic floor also triggers the problem. I research regularly on the net about the latest on neuropathy around the pelvic floor as a lot more is written about it these days. I realise now that my nerve neuropathy is actually Pudendal Neuralgia. I don’t know how I have developed this neuralgia, maybe because I had an ovarian cysts surgery and two caesarean sections (with epidural) on the same spot. Following my second caesarean in 1981 I experienced terrible pain in my legs as my lower body woke up from the epidural, I wasn’t given any explanation to why. Otherwise I cannot recall any trauma or injury that could’ve have caused the pudendal nerve to react this way. I didn’t realise so many women & men were experiencing pelvic floor & genital pain, more medical research is needed. Having read the stories of other ladies who are suffering so much, I feel very fortunate with the fact that I can keep my nerve pain under control and I am glad these days that women are able to speak up and get help. Thank you for letting me share my story, it wasn’t an easy thing for me to do but I hope it helps a little.

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